ALS Informational Seminar at Key Project

I learned the hard way that if you want to go to Kahekili Highway on the H3 from Kailua, you exit Kam Highway. Otherwise you go all the way to Stadium to get out and double back to Kaneohe. I learned it the long, 20-mile doubleback way, but next time, I'll know.

The KEY Project is way past Temple Valley but the view is beautiful even if you are 15 minutes late. The MDA crew was already there and so were all the other booth displayers. Kristen mounted the board onto the MDA table while Leslie helped me tape Lou Gehrig on the wobbly easel. Peggy is ensconced beautifully on the table on an equally beautiful metal easel. I caught lunch from servers Crystal, Leslie and Audrey while Ronda worked the crowd. There was toe-tapping music from this nice young man and I wave to Chester also working the crowd. There were many familiar faces. I meet the newly diagnosed families and try to calibrate my friendliness to their receptivity index. I give them copies of our brochure, printed in glorious color a couple hours before the UH crowd pau hana'ed at 4:30 pm Friday, thanks to my friend, Christina Higa of PEACESAT.

So here: enjoy the images. Sorry, I'll get better with practice, promise! Cross my heart.

Feeling Very Positive Today

Wow!  I have several new followers today, thank you Divina for spreading the word.  I hope I don't bore everybody with my blogs.  Anyway, it's fun for me and if it gives you a little bit of enjoyment or some insight into who I am and what I'm doing every day that's great!  I've been looking for some new technology to help me out at home using my computer and using my phone.  I think I may have finally come up with a product that will help me.  Thanks to my friend Brian, who found it for me on the Internet. 

I can currently use my computer with my headset on and Dragon speech recognition software and also a USB touchpad which Brian bought for me from Amazon.com called "easy cat".  I am lucky I still have a strong voice even though I wear my BiPAP 24/7and I still have some functionality in my hands so I can use the touchpad.  I just cannot type or reach the computer keys. My problem is that I have trouble using my phone, so I've been looking for a device that would allow me to use my computer and my phone hands-free, without touching any buttons and only using voice commands.  The Device Is a little bit expensive, but I think I'm going to give it a try.  I'll let you know what I think after I get it. This is the link to the website. http://www.nobuttonsheadset.com/index.htm

A note from Tracy Sherman, to all of us

Inspired by Chester's comments at the last ALS Support Group meeting, I decided to dig out this poem that I found...hummm..back in the 80's and always hung on to. I think I found it in a Readers Digest book my mom subscribed to and have yet to find it on the web anywhere else. When you read it you will know why I kept it...yellowed..torn...basically beat up...but still readable.

FREEDOM
I write because I am confused
And seek to understand
I sing because I am alone
And reach to take a hand.
I wonder because I'm curious
And feel I should know why.
I hurt because I'm human
And this is why I cry.
I laugh because I'm joyful
And this seems right to do.
I love because you're special
And pray you love me too.
I live because of all these things
I find in every day.
They tell me just what life's about
And I listen to what they say.
To laugh, to love, to live and sing,
Oh yes, even to cry,
These simple gifts of freedom
I will treasure 'till I die.

A Crafternoon at Penny and Brad's: Creating Greeting Cards for HALS

What is a better way to spend an afternoon than to let your imagination and creative juices flow and with hands, machines and materials, come up with beautiful greeting cards? That's exactly what we did, one afternoon in March, at Penny and Brad's hospitable home in Nuuanu Valley. Armed with scissors and determination, we were willing pupils of the craft meisters: Penny and sister, Lorraine, who molded our thirsty minds and itchy hands into crafting machines.







So here we are, showing off our products:










And, of course, as all wonderful times spent with friends of like interests and, ahem, talents end, this crafternoon ended with an awesome salad dinner. It started with home-baked garlic bread and craisin bread. Penny really outdid herself here showing off her baking skills as well;) The salad was an exercise in sharing: each one brought something to contribute to the salad. So we had greens, soybeans, avocado slices, whole pitted olives, chicken, craisins and other outrageously yumminy edibles thrown into a gastronomic concoction! Also, thanks to Penny, we curtained called our dinner with strawberry jello and her fabulous tapioca with fruit. No, you should never wonder why we always gather: there is always something for our tummies to enjoy!







With bring-home greeting cards jostling for space in our totes with left-over yummies, we headed home after a well-spent afternoon - knowing we have exercised our right-hand brains to the max for a very deserving cause: greeting cards for those we care for - family, friends and HALS, handmade with lots of love.

"Not Your Average Mail" from Nicole and Lance Wallace

Hawaii ALS is supported by folks like Nicole and Lance. We are showing them our appreciation of their support by making sure their fledgling step into the business world is steady with our encouragement.

Nicole was one of the original "cast of characters" who made up what was also the fledgling MDA ALS Support Group almost ten years ago. Her mom, Judy Birt, was diagnosed with ALS. Nicole and sister Maile took turns taking feisty Judy to our meeting place in Pali Momi. The Birt family, particularly Nicole who still lived with her parents at that time, was hands-on involved in the care of their mom. Judy was blessed with such a great brood! When Judy died, soon to be followed by dad Joe, Nicole was ready to move on and fall in love. In May this year, she and Lance, of the tartan and Braveheart lineage, wed in true Scottish fashion! (Tami and I attended the beautiful ceremony!)





Shortly after starting work here on Oahu as a mechanic, Lance was laid off, thanks to downsizing. He and Nicole then planned their own copy center. Last week, Nicole joined him fulltime in this exciting venture for this lovely young couple. This is Nicole's announcement of their new undertaking.


Aloha!

This is Nicole (Birt) Wallace. My mother, Judith Birt, had ALS. Over the years I have gotten to know many of the support group members and O’hana. I also have continued to support group activities such as attending Christmas parties and helping out at fundraisers.

After 20 years in the copy business, my husband, Lance, and I have opened up our own company in Ewa Beach. It is called Not Your Average Mail. We are a complete copy and shipping center: from basic self-serve copying to designing, printing and finishing in black and white or color. Our store also offers mailbox rentals, key duplication, passport photos, binding, laminating, rubber stamps, invitations, labels, office supplies, greeting cards, legal forms, packing supplies, folding, cutting, etc. Basically if there is something you need, we will find a way to get it done for you.







As a special offer to all my friends associated with the Hawaii ALS support group, Muscular Dystrophy Association and the UP Alumni Association, I will give you a 10% discount on our services. I will give you the best deal possible! If you get a written quote from another company, I will meet it or beat it! We will even find a way to get your order delivered to you if the need arises.

Not Your Average Mail is more than a small business center. It is locally owned: I was born and raised on Oahu and have 20 years of experience in this industry. Not Your Average Mail is committed to our customers’ needs – providing high quality copying and shipping services, along with a memorable customer experience. We even offer curbside service for our special customers – YOU! Not Your Average Mail is dedicated to serving the State of Hawaii. Remember, we are locally owned and operated – from Hawaii and for Hawaii.

Mahalo for your business! And please spread the word around…Not Your Average Mail is here to serve! For detailed information about our store and services, please visit our website: http://www.notyouraveragemail.com

Accessible Van Referral Info from Tracy Sherman

Here's some additional information on accessible van resources from Tracy Sherman. She and Mom Nancy have recently bought an accessible van directly from a mainland distributor - another option that some people may want to choose.



Hi Miss Divina!!

It was great to see you and everyone Tuesday night. I know mom enjoyed it as well but it really tired her out. I'm proud how well she hung in there. That is the longest time she has been out of bed since she got her trache put in in July.



I wanted to pass along some information now that we have our van and are very happy with it. If anyone in the group is looking, or might be looking in the near future for a van, they should try:

The Ability Center
4797 Ruffner Street
San Diego, CA 92111



Our contact there is Terry Aycock. He worked very hard to get us what we wanted and gave us a very fair price for it. Here is his contact information: taycock@abilitycenter.com (760)533-7783<--his cell number.

The shipping cost was $1074 and the van arrived earlier than anticipated. All the paper work needed was in the van when we got it. Here are a couple pictures of the van.







We went this route because we were tired of waiting for an optimal van to show up on craig'slist. This is not to discount what might be found on one of the other islands. I just shy away from buying from an individual because all the safety inspections are then up to me. The Ability Center takes care of all that for you. They provide a Car Fax report and fix anything that needs to be fixed before you get it.

He also hooked us up with Albert at Alii Adaptive Equipment (and I forgot to hand out his cards - dang it!). At no charge, he showed us how to use the tie downs correctly and safety tips for the ramp. He is also a good source to talk to before deciding on a van based on your specific needs. (808)676-3816 Cell (808)323-7956. He is a night bird so reaching him in the afternoon is probably best.

Anyway....Terry said any referrals he receives from us, he'll send us a $50 check which we will donate to our ALS fund.

We hope this information is helpful to at least one person, if you wouldn't mind passing it along to the group. I am also willing to talk to anyone about our experience if they want more detailed info.

Mahalos and love U!

Tracy and Nancy Sherman
Home: (808)672-0507; Cell (949)436-0040; Fax (808)356-0602; Email: TRLESH@YAHOO.COM

Where has October gone? Part Deux

RAMP VAN RESOURCES

I got to talk with two important ramp van resources on island who can help with our transportation needs:

1. Albert Amiott of Ali'i Adaptive Equipment (albjoe@hotmail.com; work: 676-3816; cell: 232-7956) - ALbert is an adaptive equipment installer who works with van conversion companies in the mainland. Basically, he puts the finishing (and most important) touches to your van. This service is vital in the islands because as many of us know, there is no conversion service in Hawaii! For newly converted vans, one must look to purchase in the mainland, have it converted by, for example, Braun,and have it shipped to Oahu. Albert puts in whatever accessories come with the conversion, eg, automatic wheelchair clocks and delivers the van to you. Aside from this important service, he does the initial assessment (much like the fitting for a new wheelchair) before he advises you on the best route to take, eg. which van conversion is best suited to your needs. According to Albert, it takes a wide range of 2 weeks to 5 months from ordering to arrival of van in Hawaii, depending on the accessories the van requires. The average cost of a new Rollx converted van is $42,000 while a used one would cost in the mid-$20,000's.

2. Judy Heller of Access Aloha Hawaii (www.accessaloha.com; phone: 429-4560) - Judy provides converted van rentals. The cost depends on the number of days rental, with 2-3 days at $502, all inclusive.

Having scouted for the above information, let's proceed to the last reason why October just whizzed by like someone needing to answer nature's call FAST!

FRIENDS ARRIVE

We, in Hawaii, get visited a lot, one reason we are lucky we live Hawaii, especially to folks like us to whom arranging travel outside the home is like plotting a rocket launch, without NASA! So when Britt's longtime friend from UCLA, Karen Ito, fulltime professor and parttime caregiver to her husband who has Alzheimer's, breezed into town, it was definitely a reason to chart trips to museums and dinners with the family.

Meet my friend, Karen, from UCLA.

She took this picture of Diamond Head up in Tantalus when we made a wrong turn off of Makiki Street in search of the Contemporary Museum!. We had a fun drive, tho!



In the second week of Karen's visit, my pal from college, Sokie Roman-Dinglasan and hubby, Jimmy, came to visit, too! It was also around this time that my once trusty steed, DA CARAVAN, decided to cough and screech. Despite the van problems, Sokie, Jimmy and I had a great time reminiscing with our co-UP'ians at a picnic under the stars in our backyard and a lovely dinner at John Dominis.






So. Is it any wonder why my usually steady neural circuitry suffered a short? Well, the Trusty Steed is still in Windward Dodge but notice I already have November plotted on the right? Hah! I am on the rebound and ready for November! Are you?